Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. A young man's view - tinged with humor.

The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Friday, September 17, 2010

Living in Limbo

My recovery was slow. I went home to my parents house, and took up residence in my old room there. I spent the next several months just taking it easy. I performed in the traveling Shakespeare play, but other than that, I laid low. I hung out with friends, or I went to my brother's apartment to play video games and watch movies. I saw the doctor quite often; I got used to stopping by the brand new offices my nephrologist opened up, and walking straight in, waving to the receptionist, and going into the lab to get blood drawn.

I hated needles before I started dialysis. But when you have to use really big 15 gauge needles on your arms three time a week, you develop a tolerance for them. It's funny - needles are no big deal for me now. At one time in my life, though, the thought of having to get shots crippled me. It's amazing what you fear - and how the thought of something is of greater detriment than the actual act. I have to keep that in mind every time they mention they need to do some kind of freaky medical procedure on me.

During all my experiences with my illness, I've made friends with a lot of nurses. I've seen good nurses, I've seen bad nurses, I've seen ones who genuinely care about making someone well again, and others who don't give a crap - they just want a paycheck. But on the whole, the nurses I've met in this have been amazing. But you always especially remember the bad. I'll never forget Gretchen. Gretchen was an older lady who had obviously gone back later in life to start a new career. She meant well; nothing she did was ever out of malice. But she just didn't pay attention! She was always nervous and figedty, and I remember during the early part of my recovery, I was in a lot of pain - she came in, and pressed the motorized button to lift my bed up - unfortunately, she didn't notice that my foley tube was caught in the bed mechanism. As they bed went up - my tube got pulled. Remember, this tube was inserted into my most sacred bits - and pulling on it was some kind of sadistic torture act. I screamed, and she was like "What?" My Mom said "YOU'RE PULLING HIS TUBE!" She stopped the bed, finally, and was like "Oh....." There was a lot more with Gretchen and my foley tube later too - she took it out too early, which I was happy about - it was uncomfortable, but the doctor made her put it back in. She wasn't too good at that, and I've explained how awkward it can be anyway. Let's just say, I wasn't cut out for torture and bondage S&M. Thanks Gretchen.

But for the Gretchens, there's been my saving angels. Practically everyone at my dialysis center - they all took amazing care of me. Incidentally, one of my dialysis nurses there turned out to be my former third grade teacher! She quit teaching, went to nursing school and started a second career! She used to tell everyone that I was her former student, and she'd talk about how precocious I was at that age. And they'd remark how I wasn't so different now! It made time pass better to be in good company.

Being on dialysis, and living with a bum transplant, is seriously like living in limbo. I've felt like my life has been "on hold" since I was 24 years old. Though, honestly, some seriously amazing stuff has happened during my tenure as a kidney patient - the greatest change and "thing" in my life. I fell in love and got married - love as a ESRD patient is amazingly hard.

I started dating a friend the summer after my transplant - we hung out with our friends, mostly - while she was starting her first real career after college, I was kind of drifting around - only able to work sporadically and part-time - we just drifted apart after almost two years. I was crushed - I knew that finding someone and dating someone with the codecil "Yeah, I have a potentially fatal disease that can't be cured...." was hard. When we broke up, I fell into a deep depression. I spent the next several months after that just being a fool - drinking too much, not sleeping much. Plus, my labs were slowly creeping up - I remained adamant about staying on my medicine regiment. I worked hard to keep my kidney, but it seemed like it was slowly slipping away, no matter what we did. I was feeling pretty low.

So when I met this tall, beautiful girl under a street light outside a little karaoke place, I had no idea that she would be the girl I'd fall in love with, and someday marry.

But, according to her, she had her eyes on me before I even talked to her. Women always seem to know things before you do...